Dyllice Eastwood and Jennifer Murray

My name is Dyllice Eastwood. I live in Auckland, New Zealand. I have had TM since 5 February 2001. Although I have been in contact by telephone and internet with other TM people, both here in New Zealand and overseas, early this year is the first time I actually met another TM person. Her name is Jennifer, and she lives only ten minutes away from where I work. We had been in the same hospital and rehab centre, although Jennifer got TM six months after me, and we both agreed that if we had been told about another person who was going through the same trauma as ourselves it would have helped us a lot. So we decided that we would like to start a TM support group in New Zealand.

My TM started very fast. Suddenly, on the morning of the 5 th, I developed a very bad back pain. When I tried to stand up about an hour later, my right leg wouldn’t move. The pain in my back got worse all that day and my left leg started weakening too. I told myself it would be better in the morning, but, of course, it wasn’t. So, my husband took me to our doctor. He had to almost carry me into her surgery. Even now, she says she will never forget how I looked when I arrived at her surgery. She immediately arranged for us to go to Auckland Hospital. By this time, I was unable to walk. I had an MRI, CAT scan, and lumber puncture, which showed spinal cord lesion at T8 and T9 consistent with transverse myelitis. The neurologist ordered another MRI the next day, because they were unsure of a blood clot at T10.

I was treated with IV Methylprednisolone and a reducing dose of Prednisone for three weeks. One of the worst feelings for me was the tight banding across my stomach and severe discomfort of clothes rubbing against my skin. I still suffer from banding, but it is not so severe now or as frequent.

I stayed in the hospital for 11 days. I began to walk a bit, at first with a walker. The hospital staff encouraged me to move about as much as possible, and I must say that just getting to the toilet on time was an effort in itself. I feel lucky that the bowel and bladder issues have not lasted, although there are still a few problems there. The walker was replaced with crutches, and from then on I never looked back. They gave me much more mobility. I was then taken by ambulance to Rehab Plus, a rehab centre closer to home, where I was taught to walk up stairs – still with my crutches, to walk in a straight line – that seemed very difficult. I had pool therapy which I loved very much, and gave me hope that I might be a bit normal again.

Rehab Plus had a great physio regime, and they worked strengthening my legs and torso. I was also allowed to go out for a drive with my husband the first weekend I was there, and allowed to go home for the following weekend. That was bliss. They discharged me the following Thursday, because my son was getting married on the Saturday, and I was improving. Because I had been in the hospitals for one month in total, I hadn’t got my “Mother of the Groom” outfit, so my son arranged for the lady making the wedding dress to come to Rehab Plus and make me an outfit too. I said what colour I wanted and the style, and she arrived armed with different materials for me to choose from. The nurses and patients got involved a bit, too, adding their say. Looking back, I really must have looked a sight. I was hunched over a bit, wobbling on crutches, and my hair suffered with all the medications I was taking.

However, I really wanted to walk down the aisle (without crutches) behind the bride and groom, and this made me determined to keep up walking as much as possible. Up and down the corridor I walked, and I can remember phoning my husband to say that I had walked 19 steps without any aids at all. Well, I did manage to walk down the aisle, clinging onto my husband’s arm. I cried my eyes out when we got outside; the effort was more than I realised.

Rehab Plus booked me into another rehab centre, Waipareira Trust, until there was a vacancy at Rehab Plus outpatients. I went there twice a week, where we did pool therapy one day and exercises, stationery cycling, etc. the other. I was there about six weeks. Then back to Rehab Plus. On the first day, my physio asked me the three things that I couldn’t do now that I would really like to do. That was easy, walk better, drive the car, and get myself up off the floor without looking like a beached whale!

So, she did leg strengthening by putting weights on my legs and I would lift my legs up and down. We used a wobble board for balance and the parallel bars. By the time I left there, I could walk better. Today, I have to concentrate when I walk or else I stagger at right angles, and especially if I am carrying anything. I can drive again, but I still can’t get off the floor. So, two out of three isn’t bad.

I still battle fatigue and memory loss, and have a lot of pain, especially my waist and legs. My toes feel like they are turning under, although they aren’t.

Through all of this, my family has been wonderful. I know that without their support and encouragement, I would never have improved as much as I have. I am so proud of them; especially my husband, who would spend hours at the hospital because I needed him so much. My blood pressure was always lower when he was there, because he helped me to relax.

The worst thing was that if I had a pain or problem, no one really said anything. If the doctors or nurses had said, “Oh yes, that is a symptom of TM,” it would have been alright. But I started to feel they were beginning to think I was making things up. I felt very alone. So, I look forward to the support group and meeting new people, so that they don’t feel so isolated.

Kind Regards,

Dyllice Eastwood

152 Amreins Road

Taupaki RD3

Henderson

+64 9 8109807

dyllice[AT SIGN]hotmail.com

My name is Jennifer Murrayon 17th November 2001life was changed by TM. The onset was very quick, going from a sore back in the morning to numb legs in the afternoon and, finally, paralysis from the waist down by 10:00 PM.

My TM was diagnosed very quickly. From my first MRI that night, I was told it was probably TM (lesions at T10-12). I was also tested for various other things, andspinal tap was done. I was started onsteroids the next morning. Unfortunately, the steroids didn’t bring much change. After five days I could only justthe toes on my left foot. So, I had to undergo Plasmapheresis. No one could give meinformation on TM. All I was told was that I would have to wait and see as far as recovery went.

Four weeks later, Ito Rehab Plus. I was still in a wheelchair, but I had some movement in my left leg and I could wriggle the big toe on my right foot. I still had no sensation from my waist down and I was still on a catheter.

I spent three months at Rehab as an inpatient. During that time, I had to learn how to dress myself, how to self cath and try and regain some of the dignity I felt I had lost. Having someone wipe your bottom for you is about as low as you could go in my book. The hardest work of all was to strengthen the muscles required to walk again. I loved the pool therapy. You could doin the water that you couldn’t do on land. I’ll never forget the day my Phsyio said ‘now take a step.’ I was so excited! So, I stood there withperson on each sideme up and I went to take a step. But nothing happened! Then I realized, it was because I didn’t know how to. Walking was never something you had to think about. It was something that just happened. I had to ask how to take a step. So, they told me what I had to do and I did it!That was eight weeks from the onset of TM.

By the time I left Rehab, Iusingwalking frame. I continued with Rehab for another four months as an out patient, going in three times a week for physio and occupational therapy. I was using two crutches by the time I finished there.

I was also under the Otara Spinal Unit. They tried to transfer me there, but no beds were available at the time. I see the urologist and consultants as an out patient. I also received physiotherapy for another 12 months.

I now use one crutch around the house and two when I go out. I have ongoing bowel and bladder problems, muscles spasms, and other symptoms. But, hey, we make the most of the good days and do what we have to do to get through the bad ones.

One of the hardest things through all of this was dealing with the unknown. No one could answer my questions. Finding the TMA site was wonderful. At long last, I found some answers. I also found a friend in Dyllice. It’s nice to have someone who knows what you mean when you say things like “I can’t feel anything on the outside of my legs, but I can feel things on the inside.” If only Rehab had said something to me about Dyllice having been there six months earlier with TM,helping me get in contact with her. To see someone ‘walk’ through the door who had TM would’ve given me so much hope.

I look forward to meeting new people through this support group, sharing our experiences and maybe even helping each other with tips that we’ve learnt along the way to make oura little.

Kind Regards,

Jennifer Murray

+64 9 834 5019

jennifermur[AT SIGN]hotmail.com